Currently Reading:

Hey Zipsters!

Search

Recommended Links

Check out:

Current Affairs

December 18, 2012

We're getting ready for a new year! Starting in 2013, we'll be honoring a special Awesome Cancer Survivor every month. Do you have a special cancer survivor that you'd like to nominate? Take the time to nominate your favorite cancer survivor now! After reviewing the 1000s of emails we receive here at awesomecancersurvivor.com, we recognized it's time to honor you!

Are you ready to celebrate your survivorship? Share your story with us, we want to make sure awesome cancer survivors are highlighted every month!

Each month, a special blog post will be dedicated to the Awesome Cancer Survivor of the Month. Since they are so good with promotional products, to honor our special cancer survivors, they will receive the official Awesome Cancer Survivor T-Shirt made by QLP. They will also receive an official Awesome Cancer Survivor coffee mug made by QLP, as well as a selection from our bookstore. To round out the award basket, the Awesome Cancer Survivor of the Month will also receive our custom baseball hat from QLP.

We're finalizing the details of our new logo and will be announcing our new look on January 1, 2013! Please join us as we welcome the new year with an exciting new look. T-shirts and other Awesome Cancer Survivor merchandise will be available for sale in our new store. Want a sneak peak at the new logo? Sign up for our newsletter today!

Today, I had the opportunity to attend the Golden Spike kick-off event in Boston, MA to celebrate the first electronic health record exchange in the state of Massachusetts. The event was held in the Ether Dome at Mass General Hospital. I've visited MGH many times, but never made it to the Ether Dome.

To get to the Dome, you make your way through a series of small hallways in the depths of the hospital. Stepping into the room is like stepping back into time. Five rows, laid out in a tight horseshoe formation, look down upon the center of the room. Natural light shines through a massive grated window in the ceiling up above the last row, illuminating the floor and podium as the sun makes its way through the sky. A brilliant copper and glass dome sits above it all, shining additional light upon the room. It's a magical place for an event!

There's quite a bit of history in this old Ether Dome, a surgical amphitheater, first built in 1821. source: The Dome served as the primary surgical room for MGH from 1821 to 1867 and is famous for hosting the first surgery to use ether to anesthetize a patient in 1846.

John Halamka, the CIO of Beth Israel Deaconess Medical Center, presided over the event and opened by sharing the importance of today's date. Yes, on the same date in 1846, Dr. John Collins Warren performed the first surgery using ether in this very room. At MGH, it's known as Ether Day! Throughout today's event, light shined through the large windows and cast a glow on the speakers and attendees. You could almost close your eyes and imagine what it was like on that day in October 1846 when ether was first used to "knock out" the patient, all to eliminate the brutal pain that must surely accompany a surgery of any kind. Dr. Halamka even acknowledged the similarities between these two days: "We're here today to eliminate the pain felt by patients" that have the inability to electronically share medical record information. As a 20 year, 3x time cancer survivor, I can attest to Dr. Halamka's statement. I sat through the presentation thinking of the countless times I have hand carried my medical records, scans, X-rays, lab work, and other papers between hospitals right here in Boston. The frustration at the inability to effectively share information has been constant theme throughout the past 20 years for me as a cancer survivor. There’s unnecessary anxiety and stress that goes along with the responsibility for personally carrying your own medical records to a doctor’s appointment. During a snow storm in Boston, I had the misfortune of slipping on some ice on the way to an appointment. My body slid one way and my x-rays films went flying in another, landing in a snow bank. The rest of the morning was wasted away with worry; did the snow ruin my films? Will I have to retake all those x-rays?

Dr. Halamka noted that sometimes "you need a perfect storm for innovation." It's clear from the work carried out by the teams building the health information highway right here in Massachusetts that the storm of innovation has finally arrived.

Governor Deval Patrick spoke about the importance of quality healthcare as a public good. Everyone deserves access to quality healthcare and the Massachusetts Health Information is the first major step for this direction. One of the biggest issues in the healthcare has been the lack of coordinated care, reducing the effectiveness and overall quality of care. This lack of coordination has led to needless retesting, conflicting treatment plans, and a fractured healthcare network. These are fundamental issues that will be addressed by Massachusetts’s health information exchange. Information drives decisions that impact patient’s course of care. Without a full set of information at the point

Speaker after speaker reiterated these keys points. Interoperability, coordination, and quality care were the words of the day. From the patient perspective, these are incredible words to hear. This is what patients want. This is what patients need. Health information exchange is here in Massachusetts. It's all about the patients.

The highlight of the event was watching the live demonstration of the first electronic medical record exchange on the new Massachusetts Health Information Highway. Governor Patrick and his physician stepped to the computer at the podium, logged into MGH’s electronic health record system, and clicked “enter” to send his health record to the Bay State Medical Center. Instead of Alexander Graham Bell’s famous transmittal of “Watson, come here,” as the first sounds made its way over electronic wires, Governor Patrick said “There goes the data,” as his health record made its way across the health information exchange. A video conference showed the Bay State Medical Team receiving his information.

After Governor Patrick’s demonstration, Dr. Halamka also stepped forward and logged into the BIDMC system. He accessed his wife Kathy’s record. His wife was recently diagnosed with cancer and he recounted the frustration she felt when she realized it was up to her to transport her medical records from one hospital to another. You can read more about their experiences on his blog. He reviewed her record and added a small notation to the file: "One small step for Kathy, one giant leap for healthcare in the Commonwealth." With that, he scrolled through the list of verified recipients, selected Partners Health care, and with a click, sent her information on its way. He pointed out the security in place when setting up this information exchange and showed how the recipient is selected in a drop down menu within the application. Information cannot be exchanged without a trusted network in place and cannot be shared by simply typing in an email address and hitting send. This was a great demonstration and reassuring to know that a simply typo won’t send your electronic record off to some unknown recipient. The receiver is a verified entity within this network. The sender, who authorizes and confirms their identity upon login, is also verified. It’s an exchange of information over a trusted, secure network. While this was a small part of the overall presentation, to me this was the most important part. Showing exactly how my records can be transmitted over Massachusetts’s Health Information highway was very reassuring. I left the presentation with great confidence that my health records will not end up in a random inbox. The HIE is built to securely exchange information among trusted points along the network.

This is a great step forward for healthcare in Massachusetts. The recognition that coordinated care is the key component in the delivery of the best quality of care is enormous. Understanding the journey a patient takes on their way to achieving health is the only way to make informed decisions about a treatment or wellness plan. Congratulations to all involved in this project! Thank you for bringing us one step closer to receiving the best possible healthcare in Massachusetts.

September 08, 2012

Please accept this blog post as my application for a travel scholarship to attend the upcoming Partnership with Patients Summit in Kansas City, MO on September 21st.

I would be honored to attend this powerhouse event in Kansas City. To me, this is the event of the year that I need to attend. With the incredible speakers on tap to present, I simply cannot miss this event. The opportunity to learn from the leaders of the epatient movement, including Regina Holliday, Dave deBronkhart, Casey Quinlan, and Trisha Torrey all at the same time is a dream come true! I have followed so many of these key pople for so long on twitter or Facebook.

While I've had the chance to meet some of the folks that will be attending, the chance to finally meet so many of them at once and have the chance to network with other members of the Society for Participatory Medicine is truly a once in a life time chance. I know I'll come away from this event, with a renewed passion and drive that will allow me to take my work to the next level for these wonderful organizations.

As a three time, 20+ year cancer survivor, I'm truly a "professional patient." As a member of the Patient Family Advisory Council at Tufts Medical Center, I'm working hard to make sure the patient voice is heard, recognized, and respected as a key person in a healthcare team.

With my work in social media to develop virtual support communities like #BCSM (Breast Cancer Social Media) with a fellow breast cancer surivor, Jody Schoger, and Dr. Deanna Attai, I can certinaly share everything I've learned on how to build vibrant communities working to solve critical healthcare issues from the patient perspective.

As Community Manager at the HIT Community, I'll also use my enginering background to help make sense of the work currently under way in the health information technology industry. My goal is to make sure that patients understand how health infomation technology can ultimately improve their health outcome. Understanding the importance of electronic health reacords is very important to me. Networking with individuals while in Kansas will help me expand on a successful series I've started collecting EHR Journeys Stories from physicians and healthcare providers. Meeting more people that are willing to share their stories is main reason why I'd be honored to attend.

Everything I learn at the Partnerships with Patients event will be put to immedidate use, throughing blogging about the experience, to telling my fellow PFAC council members about the journey. While some might think this is "just a travel scholoarship," I say it's a grant to attend, meet, hug, and connect with some of the most influential patient advocates working very hard to improve healthcare for patients around the world. I'd be honored to be included in this once-in-a-lifetime summit.

Thank you for the opportunity to submit an entry for your spconsideration.